Author, Speaker, Writing Tutor

autism intervention

Alfred Hitchcock has something to tell us about educating children—I know that is hard to believe. I learned that during the film-making process he worked off two scripts. He had the normal script, what he called the “blue script”, which included all the parts of an ordinary script: scene locations, dialogue, action, character names. But he also had a “green script”, and this was much different. The green script kept track of the emotional aspects of the film, what he wanted his viewers to feel as they watched the film. The logistics of the blue script—the action, props, setting, lighting and camera angles—could be changed, but the green script was more important. His focus was on how the viewers felt, whether those feelings were excitement, intrigue, fear or relief.

The emotions of a child are always what matters. As parents and teachers, we have to be focussed on the “green script.” Most children are born with a powerful desire to learn, a curiosity about the world, and a need to engage with everything within it. However, even with neurotypical children, our schools mostly fail to foster this natural curiosity. Among regular high school kids, some studies indicate that only 37% of kids are engaged in their subjects. This may seem like a digression from talking about autistic kids, but it isn’t really. Former Dean of the Ontario Institute for studies in Education, Michael Fullen, who advises policymakers and local leaders around the world to provide leadership in education, tells us the solution for education is “to be irresistibly engaging for students…”

If this is the case for a neurotypical child, it is a hundred times more so for one with a learning disability or autism. It makes no difference if a child learns to speak in sentences today or tomorrow, as long as he is progressing. It makes no difference if he learns to clap or sing or point or clap or sing, as long as he is moving toward a goal. But that goal isn’t really about speaking or pointing. It’s about the learning process itself, about influencing how the child with autism feels as a learner.

What matters is that he speaks because he has learned that speaking is fun, useful, and that he can do it. He points because he wants to share something. He repeats all these behaviours and comes back to learn more because he likes to learn and is enamored by the process.

I’m not arguing with anyone who wants to bring their children through all the important developmental milestones. I am not saying that pointing or speaking or counting or reading don’t matter—they do. I remember all too well what it was like to have a non-verbal child who couldn’t point or communicate in any way, screaming on the floor. It was sheer hell.

However, we don’t have to sacrifice the emotional side of learning in order to achieve specific outcomes. We really need to value the green script. It tells us that when we are teaching a behaviour—pointing for example—that the child must feel pleased with this pointing stuff, happy to comply, and enjoy it so much he or she will want to point in the future. Let’s start with pointing for an object he wants but that he cannot reach. Let’s move onto him pointing to share information. This is all good, but only if he feels great about pointing, great about the person who is teaching him, and great about learning.

So, there are really three scripts here. What he learns, how he feels about the people with whom he is learning, and how he feels as a learner.

Every time I work with my son Nick—and this has been going on over a dozen years now—I think about the process of his learning. The process is the most important thing. If he feels confident and curious as a learner, he will carry on learning years after I am gone. This is what matters to me.

I am looking for signs of stress because if he is getting stressed he is not learning. Stressed adults don’t learn well, and for children it is even more profound. If a child feels threatened or worried it affects her ability to learn the thing in front of her, and plowing on regardless will inform her future response to the process of learning, itself. Oh, she will still learn. But she will learn to fear the situation (the people and setting and materials at hand), and not much else.

Not all stress is bad. Writing on the Johns Hopkins School of Education website, Victoria Tennant says, “Stress is positive when the person feels stimulated and able to manage the situation. This positive response prepares the body for action and activates the higher thinking centers of the brain. A positive response to stress can provide the energy to handle emergencies, meet challenges, and excel.”

All of us love a little stress—especially kids. They often like mildly scary movies or short rides at theme parks that whizz them up or spin around. My son loves electronic games which create a world of threat around the player who is trying to survive. I asked him just now why he likes them so much and he said it helps his focus and attention.

I can remember all those years ago when I would ask him a question without a specific rote answer and hope he could say anything, even “I don’t know”, which had to be taught to him like everything else until he fell in love with learning.

But back to stress. Ongoing stress, especially in what is supposed to be a learning environment, creates poor learners of children. For autistic children, stress can switch them off so fast that an entire teaching session is lost. Repeat that stress, and their relationship to learning and to the people who insist upon it will be seriously damaged.

This is why any interaction with children in education has to be positive. Goals have to be attainable; success has to be ensured. There is no place for coercion or intimidation with children—they will only learn to avoid teachers and anything they associate with a soured experience of learning. For children with autism the stakes are higher. They need skills that they cannot access without help, so that help—in the form of parents, teachers or therapists—has to come with positive feelings.

Those who criticise the use of applied behaviour analysis (ABA) do so because they imagine it is coercive or very boring. It can be. So can all teaching. Years ago, I spent a morning in my daughter’s year 2 primary class. The kids were treated as though they were little criminals under gag orders. Their only hope of getting through the day without being criticized or humiliated was to say nothing “out of turn.” One cannot imagine twenty-five adults in a room “being taught” and saying nothing (no movement, no goofing off) for hours on end, yet this was expected of seven-year olds.

It was appalling. I removed her from the school the next day and home-schooled her for a couple of years before starting her again elsewhere. She’s now a very high-achieving young adult, despite a poor start at what amounted to a contemporary example of Victoria schooling.

I couldn’t take such chances with my son. Had I seen ABA being “administered” in a manner that upset him, I would have stopped it immediately. But this wasn’t what happened. Instead, we kept one eye on the blue script—what he really needed to learn—and one eye on the green script—what we wanted him to be feeling while learning.

And now he loves to learn, which is a good thing because it is clear that life-long learning is going to be vital for all of us as our society moves ever more swiftly. And because, even at the age of twenty, he is forever catching up.

I will never forget begging a committee at his high school to let him study at A-level, trying not to cry as I explained that while he wasn’t necessarily A-level “material” he loved his chosen subjects and ought to be allowed to continue. They stubbornly insisted that he couldn’t get an A-C grade and that he wasn’t welcome to continue. I became increasingly exasperated with the notion that the anticipated grade should be the criteria by which they made their decision whether he could continue. Finally, I told the committee that if they won’t allow him to study any longer at his own school, they would have to tell him that news, because I would not.

In the end, they allowed him to study after all. He later achieved a total of two A-levels and four additional GCSEs, some of them A’s, some of them C’s. He loves to learn, and believes he can learn. This is what we need for all kids–especially those with autism, who cannot afford to ever stop learning, and for whom the world of things, people and ideas must be imagined as a place to understand with joy, not a threat to be avoided.

You have to hand it to kids with autism: they won’t tolerate being bored. From early in life my son made it clear that if a person wasn’t interesting, he would disregard them. Visitors arrived to the house but he stayed where he was on the floor, pressing his thumb into the carpet, swiping a train in front of his eyes. If someone said hello to him he might look up. But if the greeting was followed by nothing particularly interesting, he saw no reason to stand up, say hello, much less smile.

Oh, I could get him to do so, of course. I could walk over to him, take him by the hand, lead him toward the visitor. He was a particularly compliant kid for one with autism. Once he was able to speak, I could even encourage him into a greeting. “Say, hello!” I’d instruct. “Hello,” he’d say, flatly.

But that was just a prompted greeting with nothing to encourage him to repeat the behaviour. He didn’t want to say hello. He wasn’t invested in it.

In a neurotypical child, working through a rote response might cause him or her to feel dutiful or grown up. It might encourage the habit of social greetings, in fact, as the child learns there are social benefits to being polite.

But rote social greetings didn’t do much for Nick. Not at first, anyway. At that time there was no social benefit, you see. He didn’t really care.

Sand running through a glass timer was interesting. Certain shapes—in my son’s case, circles—were interesting. He collected coins, bottle caps, checker pieces, buttons. You’d find tiddlywinks and milk bottle tops bingo markers hidden under the bed. He’d throw all these things in the air, collect them back up, throw them again. It delighted him, but he didn’t share the delight with anyone else. He didn’t say, “Look at this!” He didn’t say anything, in fact, because he couldn’t. However, not even his non-verbal communication invited me.

He should be interested in people, we were told. That is what is wrong with him. I agree he should have been interested in people, but those who were monitoring the extent of his autism and everything else about him were wrong to imagine he wasn’t interested in people. His threshold for what made them interesting was just very high. People had to do something to be interesting. They had to do more than just be.

I’ll give you an example. Back to his grandparents…they would arrive to the door. First, they would greet their own son (my husband), then me, then our daughter, and finally Nick. There was no changing this, by the way. The grandparents were more rigid than my autistic child. If I tried to persuade them to say hello to Nick, to get down on his level, to think of something rewarding to associate with their arrival, they looked at me as though I was being rude. Grandparents were to be respected, not instructed.

They wanted Nick to wait a reasonable amount of time it took them to get inside and speak the adults before turning to a child. That was how it was done. That fact that his attention span was about five seconds, after which he lost interest, was something he needed to learn to expand. And had he been neurotypical, he would have expanded it. Or he would have called out to be heard, ran up and hugged his grandparents, bursting through whatever barrier existed in order to get the attention he craved.

But he did none of this. The value of the interaction was so low that he walked away.

Once the grandparents settled down in the living room with their tea and their talk, they may as well have been pieces of furniture they were so boring. He didn’t want to show them his toys like our daughter did. He didn’t want to show them his drawings or the clay model he made or the award he won at school. It wasn’t simply because he didn’t draw or sculpt or win any awards in school. He didn’t seek their praise because it didn’t really matter to him (though I must add that it would very much matter in later years).

Anyway, he had stuff to do. We called his flapping his hands and strange ways of looking at objects close up to his eyes “stimming.” He might have called it “fun.” Anyway, he had to do something with his time, right? And before we started the constant social stimulation and learning through a play-based ABA programme, he didn’t have the imagination to go beyond very simple means of occupying himself.

Sometimes, he didn’t seem to be doing anything. He would zone out entirely, staring into space with such apparent disregard to those around him that the head teacher in my daughter’s primary school once remarked that “there didn’t seem to be a lot going on.”
Maybe there wasn’t. He was autistic. Not “high-functioning” either, not yet. He would grow into the HF label, but that took a year or two of hard work. Hard for him, because learning was quite difficult for him (at first). Hard for us because we had to be super fun and engaging, proving him to him over and again that interacting with people was worth it.

I keep hearing people who dislike applied behaviour analysis (ABA) as a teaching tool for autistic children because it is “dehumanising” or doesn’t take into account the way the child feels. But that was not how we were taught to teach our own child even seventeen years ago, when we began. We were always looking for how Nick felt as a learner, as a beloved child, as a person who is deserving of respect and care, but also deserving of an education.

We had to somehow persuade our son that people were fun, that learning was fun, that communication was fun. We had to convince him that experiences were always enhanced in the company of another, that games were best when shared. Did it work? Hell, yes, it worked. He loves being around people–the problem we have is that there aren’t that many kids his age who really want to be around him. He even shares computer games. “Hey, it’s your turn, Dad,” he now says, passing his father an electronic game of Scrabble on his iphone. He doesn’t want to play by himself.

My son was diagnosed with autism early here in the United Kingdom, where the current wait for an assessment for autism is over two years. In fact, Network Autism recently published an article indicating parents “tended to wait around 3½ years before receiving an autism diagnosis for their child.”

Our appointment at the now-defunct Battle Hospital in Reading was pushed forward because I’d embarked on a programme of early intervention with Nick, something the health authority in my area felt was egregious and unethical. It turned out that if you began teaching your child as though he was autistic without the actual diagnosis, it triggered alarm bells in the system. That isn’t a reason in itself to embark in a programme, but some parents currently enduring that two year wait might want to go ahead and embark on a programme of early intervention before the diagnosis. Why?

Because teaching your child is always a good thing. And because, in my experience, it can sufficiently annoy people that they bring the diagnosis forward so that they can apply their own notions of therapy.

Beware, however. Their good ideas may not be any better than your own. In fact, they may not have any good ideas at all.

I am often asked what we did for Nick in those early years. The combination of interventions we used fall generally under the category of Applied Behaviour Analysis. In short, ABA doesn’t ask what caused the autism. It is in direct opposition with the psychodynamic approach, which seems to me wholly inappropriate (if not scandalous) for young children with autism, though that is for another blog.

ABA looks at how to address all the deficits a child with autism has, whether those deficits are in attention, social interraction, language, play, or in how to use their body. It should NEVER use coercion or intimidation or “aversives” (punishment). The skill of a good therapist is in making the learning experience fun, not frustrating. Done well, it’s fantastic.

Most people think of ABA as drills. (“Touch the table.” “Well done.” “Touch the table.”) That is not how ABA is done—not in my house and not in any of the houses of parents I know who have embarked on such programmes. These days, good ABA is wildly imaginative, “out-of-the-box” therapy in which a person with a whole lot of knowledge of normal child development escorts a young child 1:1 through the milestones he or she has missed. You’ll know if it is good ABA because a child will love it. If he or she does not, fire everyone involved (and get retrained yourself).

In some ways, ABA is just like any parenting and coaching—just better, more informed, and with more of an eye on how our child was feeling during the learning process. My husband, our therapist, and I even used ABA to teach Nick how to ride a bike, for example. We did this not because riding a bike is essential to a child but because the balance and coordination required is very useful. We also hoped that he’d like it, once he “got it”.

It took a long time. We nearly collapsed with exhaustion on several occasions. However, Nick learned and he now rides his bike with the same ease as anyone else. How did we do this? We looked for external rewards (the bike was not at first intrinsically rewarding as it is with a neurotypical child) to incorporate into the process of bike riding. We formed a large cheering squad of well-wishers (or at least three of us) . We did it with patience and fun, and with a view to how he was feeling throughout the “lesson.” Same as everything else we taught him, frankly.

But you won’t start with a bike. You may start with trying to get the child to notice you in the room. And the people who are supposed to help you (the diagnosing paediatrician? The health authority? The local education authority? Someone? Anyone?) probably won’t help you, though please let me know otherwise if you have a good experience because I would be thrilled to hear it!

If you are in the UK, think about giving the people at Child Autism a ring. I visited them back when they were called PEACH and Nick couldn’t talk or play or interact with anyone except me (and usually only to sit on me).

They helped me. I didn’t use any particular programme they were selling, but I did get a lot of encouragement. Their reading list is good on its own (though they might want to include the novel, Daniel Isn’t Talking, if only for inspiration).

Are these therapists perfect? No. Sometimes, they concentrate too much on discreet trials. Sometimes they are too verbal for the child with autism. They can forget to reward non-verbal communication or fail to wait long enough for a child to work something out. They are humans, after all, and they are on camera. But most of them are good. Very good. If you watch them you, as a parent, you will learn. And even if you don’t “do ABA right”, your child will learn, too.

Here is another reason not to wait for the diagnosis to start teaching your young child with autism: the diagnosis isn’t initially all that helpful.

For us, the diagnosis was a gruelling two hour procedure during which they tested our three-year old in various ways which were entirely ridiculous as he wasn’t paying attention anyway. They probably knew he was autistic in the first two minutes but went ahead and tested him for other, additional deficits. I really don’t know what they were doing, other than satisfying themselves that he was an uneducable timebomb that would grow into a somewhat dangerous member of the family from whom we’d need to protect our other child.

Why do I believe they thought that? Because they told me so.They said Nick’s IQ was low, that if he developed any verbal language at all it would be purely functional. They said only kids with Aspergers have any hope of higher education. Concentrate on my normal child, they advised, as though Nick were already a lost cause.

They also told me using applied behaviour analysis to help him would mean I trained him to ape the development of a neurotypical child, ignoring the fact he had a permanent, insurmountable disability that required the sensitive handling of one of their own professionals. They were wrong about all of this—time has proven as much.

Luckily, I am a tenacious, hard-headed, opinionated woman. I was even back then in my early thirties. While they were assessing Nick, I was assessing them. I decided they had no ongoing interest in helping children with autism. The paediatrician was there to sort through children, discarding some, referring others. Nick was pretty much on the discard pile. Even in his best Winnie-the-Pooh jumper and shiny Clark’s shoes.

“Research shows ABA works,” I told them. “If you embark on an intensive programme and generalise what the child learns into lots of environments—”

They disagreed. They’d done their own research. It didn’t work. I might have considered one of their own professionals but they had no one available—and nothing was on offer except possibly a place for Nick in a special school nursery within the next six months. Ah, a special school nursery! Surely, that would help him, right?

Wrong. They didn’t really have great ambitions to help Nick. They wanted him to interact with other children, but those children had to be autistic, too, because Nick was autistic. Nursery school wasn’t really school and it wasn’t really play. It was just a place to put these kids.

Was “autistic” some special social group, a subset of society that required their own closed quarters? If he interacted with another child (which was unlikely at that time) and the other child didn’t respond (very likely), how did that help Nick?

It didn’t. It helped the local education authority tick a box or complete a file. Maybe they thought they were doing me a great favour by relieving me of my awkward child for a few hours a day. Who knows what it helped. Not my son, who needed help urgently, who was now missing milestones at a rate of knots even with the ABA (because neurotypical children develop faster than autistic kids playing catch-up), and whose social isolation and remoteness from the family had been decreasing since we began the intervention.

Which brings me to my third reason not to wait for a diagnosis: you don’t have the time. Your child doesn’t have the time. The brain remains plastic for his (or her) entire life, but the best time to encourage learning and to improve your child’s relationship and access to learning is as early as possible.
I carried on with the ABA. The local authority hated me, the wretched special needs coordinator hated me, a whole host of speech therapists who never taught him anything but arrived every few months to audit his progress, hated me. Or maybe not “hate”. They resented me and talked about me and disapproved of me and discouraged me.

Eventually, I began to hate them back. We’d squabble over little things. The special ed coordinator wanted me to teach him to communicate using PECS (picture exchange communication system) instead of words, even though he’d been picking up sounds and trying to make words since we began ABA.

“Why should he use pictures when he can talk?” I asked.

“PECS are very useful.”

“So is language.”

“PECS are language.”

She was right about that. PECS are a form of language. So is sign. So is screaming on the floor. But I like words.

“I mean verbal language,” I said.

“Why is it so important that he talk?” she demanded.

“Because he can.”

Did I need another reason?

Clearly, I was insane to teach this child through ABA when I was not a teaching professional nor a psychologist. I hired private ABA specialists (a couple of whom also hated me, but that is another story) and had them teach me what to do. I kept records and when Nick’s proress was so fast that the record-keeping became onerous, I dropped that.

By age 4 (1 year from being non-verbal), he was regularly speaking in sentences of 5-10 words. By then, I’d hired teenagers and was training them to interact with him for an hour or two at a time so I could have a break. We had a 4th birthday party, all those young therapists and Nick. He stood on the chair and blew out the candles. He smiled at all of them.

There were no children present. I wanted him to have friends—of course, I did. But what could I do? Other parents mostly avoided me just in case I asked if their child would like to come over to play or go out to an event with us. Nobody wanted to hang out with me. Why wasn’t my child in special school anyway? What was wrong with me? Was I in denial?

Yes, I was in denial. Or maybe I can beef up the description and say I had vision. If you are going to embark on a many-years project without any support from anybody you aren’t directly paying, you better have vision.

I remember that nursery at the hospital. We saw it on the winter morning in December when he received his diagnosis. Through the window on the door, under the laboratory-style lights that hummed rom the ceiling, there it was: a chaotic room of clearly very unwell children. Neorological abnormalities, chromosome abnormalities, bizarre ways of moving and standing. They weren’t playing or interacting with each other, but moved around one another a bit like how Richard Feynman describes atoms moving, like little particles “in perpetual motion, attracting each other when they are a little distance apart, but repelling upon being squeezed into one another.”

Any one of those children on their own would have presented a teacher or therapist with a world of possibilities and hope. Crowded together in the awful classroom on the ground floor of the hospital, they seemed doomed. How many months would go by before their parents moved them to yet another room? Then another? And at what point would these parents cotton onto the fact nobody was actually going to try to do very much for their child? They couldn’t, you see. There were too many of them. Anyway, it was more important to accept their condition, wasn’t it? Much better to accept it than improve upon it?

Not for me. All neurological conditions are very serious but some are far more profound. I know there are conditions about which I could do nothing. However, it seemed to me that to agree with the special ed people and the grossly incompetent paediatrician that Nick’s condition was already a done deal, that no significant progress could be made, was an assumption with little scientific backing. Yes, he was a non-verbal three-year old who swiped trains in front of his eyes instead of rolling them across the floor, who flapped his hands instead of waving, and who did not respond to a single word I said—not even his name. But he was only 3-years old. I could accept he was autistic, but not uneducable.

I didn’t wait for a diagnosis. When it arrived, I didn’t follow the advice of those who gave it. I am not telling any other parent how to raise their child. But what I will say is that in my experience, dedicated parents who teach their children are the best teachers around. You can do this—you may not see your child develop so well that he or she loses the diagnosis of autism (though I have seen this in some children). I’m not sure that should ever be a goal, as many autism traits are really quite useful if they aren’t accompanied by all sorts of impairments often associated with the condition.

However, in my experience a child with autism who is engaged and communicative is a far happier adult, with far more possibilities for his future.